As patients increasingly take centre stage in the world of medicine, pharma and biotech, patient engagement and support programmes are changing.

Regulators and reimbursement authorities are now asking for patient experience data, quality of life outcomes and real-world evidence to support their decision-making processes. This has driven life science companies to consider patient needs and requirements as key performance indicators (KPIs), placing patients as the end-user, whereas previously healthcare providers were seen as such.

Yet, despite increasing importance placed on services to educate and support patients, do life science companies really know what patients want and need? The questionmark remains. Patients speaking during Cognitant Group’s roundtable at Reuters’ recent Pharma & Patient Europe 2020 virtual conference highlighted a mismatch between pharma-led support programmes and reallife requirements, calling for, amongst other things, better emotional support and a more holistic approach.

We are in the midst of a dramatic technology revolution in healthcare that has been accelerated by the covid-19 pandemic. For example, we have seen a wholescale uptake of virtual consulting, HCP-to-patient messaging, patient education and digital monitoring of patients, all of which offer the potential for a more personalised, data-driven approach. The increasing use of digital patient networking channels also provides the life sciences industry with unprecedented insight into patients’ needs and lives.

However, pharma company roundtable participants also identified blockers to useful patient engagement, including strict regulations over communication, and traditionalist attitudes endemic in certain siloes of the industry.

In this paper, we revisit the roundtable where patients, pharma experts, doctors and service providers swapped experiences and discussed the central issues affecting patient engagement, and support programmes today. The group considered learnings from the past and potential for global change in the future. Will pharma ever be able to provide the emotional and wellbeing support sought by patients? Is industry even the best party to do so? Can pharma ever prove the value of patient engagement in terms of direct return on investment (ROI)?

Whatever the case, patient engagement is going to be an increasingly crucial pharma activity which can no longer be shelved.


In a poll, the roundtable participants agreed that pharma and biotech are not doing enough to support patients, particularly those with chronic conditions.

One patient spoke about the struggle to find the right treatment. It was not until the patient had been subjected to a host of unsuccessful, cheaper options before they were finally given a biologic that worked. The same story was resonated by others.

The same person outlined problems finding out about available treatment options when they were diagnosed – something she suggested industry could do more to support.

However, from industry’s perspective, regulation is a big blocker to the provision of information about treatments, particularly in many regions outside of the USA where direct-to-patient advertising is not allowed.

Ensuring patient advocacy groups have the correct information to pass on to patients may be a way industry can promote awareness of treatment options, without directly communicating with patients, another participant said, adding peer-to-peer education is very helpful and becoming more prevalent with digital services.

Patients stressed that product information from industry, whilst necessary, is just one portion of a wider range of needs that patients have; emotional and wellbeing support is equally sought after, particularly for long-term conditions that affect patients’ everyday lives. Patients described the difficulties they face, particularly when diagnosed at a young age, coming to terms with the fact that their condition is going to be with them for the rest of their lives. Patients said they seek non-medical information over lifestyle, relationships and other holistic support.

Patients also reported that, in their experience, support programmes from industry are often missing vital elements. They cited highly medicalised information which is presented in a negative light. One patient recalled being presented with lists of ‘do not’ commandments, rather than being given information on what still can be done when diagnosed with a chronic condition. For patients facing a lifetime of illness, programmes which constantly remind them of the limitations placed on them by their condition only increases the burden and anxiety.

The group also indentified the need for more personalised information from the industry, rather than the one-size-fits-all solution which pharma traditionally provides. For instance, programmes should be tailored to suit different age groups, take into consideration cultural and language aspects, and even account for disease severity. Those with chronic conditions currently in remission still need engagement to ensure they continue to adhere to the right treatment.

All of the experts agreed that industry should prioritise programmes which make patients’ lives easier, in terms of understanding their condition, participating in clinical trials, finding treatments, understanding their treatment choices, collecting prescriptions, making appointments, taking the medication and other matters.


In recent times, pharma has been trying to find better ways to engage with patients, for instance through new digital platforms, but mistakes have been made.

One former pharma employee at the roundtable said that one of the biggest mistakes a company made was to ask for too much information, whilst doing too little with the collected data to deliver value back to patients.

This is evidenced by the multitude of pharma apps currently in circulation, which see minimal download numbers. Yet developing these patient support programme apps is costly, both in term of finances and resources.

Patients should be consulted and involved in the development of these services as they are being built, other industry players agreed. Engagement strategies which use the right language and communicate on a level with patients are key.

Another industry executive told a success story, noting that their company consulted with patients when building its recently launched app. A patient organisation is already keen to promote the service.

‘Expert patients’ — those who take a professional approach to managing and advocating for their condition, or who do so on behalf of relatives — are often willing to engage, and will provide the perspectives sought by pharma, the executive added, but it is also important to ensure a broad range of patients are consulted during the process.

As an aside, it was noted that one interesting consequence of the move to virtual conferences is that patients are more able to attend events such as the Reuters event. It will be interesting to see how this changes the dynamic of medical conferences and the involvement of patients in future services.


The question remains whether providing certain programmes that patients value, such as those that offer holistic or emotional health support, are beyond pharma’s grasp.

One industry executive said pharma is mainly concerned with ‘tangible’ communication, for instance, ensuring the medicine is taken correctly, but questioned whether pharma could or should go beyond this. Pharma is not expert in emotional support, the executive said, adding that the regulations limit what pharma is able to do drastically.

Regulation from governmental authorities and even trade bodies is a key barrier since pharma are concerned about staying compliant with rules in place over patient engagement. The lack of harmony across Europe on various rules and regulations is also a big stumbling block for pharma attempting patient support programmes.

In fact, uncertainty over regulation is perhaps an even bigger barrier than the regulations themselves, one industry expert said. For example, though Europe clearly does not allow promotion about a specific product, there is wide uncertainty over engagement through social media. Devising patient strategies takes a lot of energy when it comes to gaining consensus from medical, legal and compliance teams for this reason, leading some to ‘give up’ on being innovative. A good piece of advice is to “make sure you check with your legal team before you accept someone’s advice that you can’t do something”.

The same organisational issues can mean that getting budgets for patient support programmes approved is difficult. Budget holders within life science companies generally require proof of ROI to release funds for a programme. The participants agreed this is difficult when it comes to patient support initiatives.

Nevertheless, this is likely to change. With pressure from regulators and reimbursement authorities, and the move to value-based pricing, payers are actively asking for evidence that interventions do have an impact on patient outcomes, adherence to treatment and quality of life. The accelerating use of patient-focused digital tools, such as digital support services, messaging and monitoring, open up new opportunities for pharma to achieve this.


Industry must now work with each other and, most of all, with patients over best practices for these programmes.

Recommendations for best practices are:

1. Consider the long-term needs of patients and how you can support them

2. Involve patients in the creation and development of your plans — not just expert patients

3. Think holistically — how can you help the psychological and emotional needs of people?

4. Patients are not all the same — how can you personalise your approach?

5. Be prepared to challenge the traditional role of pharma

The key is to put patients at the centre of patient support programme design, identifying ways to engage with patients in a meaningful way. Add to this the know-how needed to create balanced and compliant programmes with the patients’ needs at centre stage, and we will have the potential to significantly improve impact in terms of patient quality of life and health outcomes.


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